(Editor’s Note: We’ve been running past columns of Ask Denise. This column originally appeared on Caregiving.com in June 2004.)
Dear Denise,
I am a full-time registered nurse with a family of my own. We live in upstate New York. Out of sheer emergency we moved my 88-year-old grandmother into our home as she was deemed legally blind due to cataracts. After one month here awaiting surgery it is obvious she is also suffering from mild dementia with a strong sundowners component.
We have tried to balance all kinds of different meds to try and control her aggressive verbal outbursts and memory loss. We have tried aricept, risperdal and paxil. The aricept after two weeks seem to make her more agitated and aggressive, the risperdal seem to make her cry alot and so far the paxil 12.5 cr is not doing alot??
This is the hardest thing I have ever done in my life. My 17-year-old son has transferred to the living room gram has occupied that room. My husband and I rotate times with our work schedules so someone is always here. Her mood is very labile going from the loving sweet gram we knew to mad to sad and on occasion down right aggressive and mean.
Our days are consumed with her care even though she is ambulatory and continent and mentally oriented. During the day we try to visit with her as much as possible give her simple chores like laundry folding and dishes, etc. to make her feel productive, as this is how she has always been. She has never been one to sit in a chair and read watch TV or hobbies; she is a worker. I’m so scared for family’s long-term survival with this.
I can see the look in my son’s eyes. He has been wonderful with the situation, but I can tell he misses the family unit as he knew it. We have not even been able to go anywhere as a family since she moved in. We have taken her with us when possible but that adds other problems to the deal. We did set up a sitter one night when we left for a concert but this is the night she got totally disoriented, aggressive and verbally abusive to the sitter. I surmise her security net was gone and she couldn’t handle it??? We are scared to leave her again.
My grandmother lived for years independently in her own huge home totally self sufficient–major changes. We are a young family; I am 39; my husband, 44; son, 17. This is the biggest challenge we have ever faced. I go to work every day with my stomach in knots and guilty my husband may not be able to deal with some crazy situation that arises?
Although he has been 100% supportive and helpful I couldn’t survive without his help. We are hoping once some of the eyesight is restored maybe the mental status will improve but there is no guarantee to this. I can’t imagine alternate care as she would whither and die. Just staying with me has been a major feat for her. Can you give me any suggestions or words of wisdom for the road ahead?? I can’t believe how this has consumed our lives. I can almost see depression lurking around the corner. Thank you so much for any insight you may have.
Hi,
This is a consuming job! And, because it seems that nothing is working right, it’s hard to see that you have done so many things right. You’re working with her physician to find the combination of medications; you’re structuring activities, such as folding laundry, that encourage her independence; you’re doing your best to find help for her and your family.
It’s hard to estimate the upheaval, for lack of a better word, that happens when an aging relative moves in. It’s a huge change for all of you. The adjustment for all of you is a process; none of you will adjust over night, or within a month, or even within a year. Just when you feel you’ve adjusted to one situation, another comes along. You may find that what works now may not work when your grandmother returns home after surgery. It’s tough!
It is important to remember that this is a process. Focus on the most pressing issue that faces you today. From your message, it seems to be a struggle to carve out time for just you, your husband and your son. It’s unfortunate that the first sitter didn’t work out. But, don’t give up!
Try again, but make a few adjustments. For instance, maybe the sitter can come for an afternoon or evening when you’ll be home with your grandmother. Spend time with the aide, helping her understand how to best interact with your grandmother. Then, the next time the aide comes, perhaps you run a quick errand, leaving them alone for 30 minutes or so. Then, the next time, leave for a longer period of time, until you feel comfortable going out to dinner with your husband and son. And, consider using the sitter a few times a week so that you all can count on regular breaks.
If you use an agency to find a sitter, be sure to ask for the agency staff for suggestions and help to make the adjustment as smooth as possible for your grandmother.
It’s okay to make time spent with your husband and your son a priority–and it’s okay to try different services and/or sitters until you hit on the right one.
And, continue to work with her physician to find the right drug combination. As you know, drug interactions for the elderly can be somewhat tricky; finding the right dose and combination is an exercise in patience for all of you.
Your community may have programs and services that can help. Contact the ElderCare Locator at 1-800-677-1116 for the number of your local Area Agency on Aging. The agency can tell you about adult day centers your grandmother might attend after her surgery. The agency also may have other help available so that you and your husband have more assistance during the day.
Because your grandmother seems to have dementia, a call to your local chapter of the Alzheimer’s Association might be a good idea. The chapter will have lots of information about managing her behavior. In addition, the staff can tell you its hotline that you (and your husband) can call if you need some suggestions on managing her behavior.
We developed a Mission Statement for Family Caregivers that you might find helpful to review. The mission statement helps you to prioritize and reflect on your caregiving responsibilities. You can read it here.
We do have online support groups through which the members communicate via e-mail messages. We have a group for family caregivers raising children, as well as a general group for family caregivers. If you’d like to try any of our groups, please let me know. It does help to know you’re not alone!
Finally, be sure to enjoy where you live; you are surrounded by such natural beauty. Spending time in nature’s beauty (even if only five minutes a day) may just the relaxing break you need.
Hang in there!
Stumped by an on-going struggle? Searching for meaning in your journey? You’re not alone! Family caregivers ask Denise M. Brown, Editor and Publisher, Caregiving.com, for her insights and suggestions to their caregiving conundrums. Have a question for Denise? Just e-mail her. Denise will do her best to answer questions within 24 hours.
If you or your care recipient are in a crisis, we urge you to call a health care professional immediately for assistance. Denise only provides general insights about general situations. You should always consult your own lawyer, financial planner, health care professional and other professional advisors for advice specific to your situation.
